I Am My Own Hero

From moping over what he had to go through to finally coming to terms with it, like many other cancer patients, Michael has experienced it all. He was () years old when he was diagnosed with head and neck cancer. Now, as a cancer survivor, Michael waives his right to stay anonymous and without holding back shares the journey of his battle against cancer, hoping that his stories could inspire other cancer-stricken patients, especially youths.

 

  1. When were you aware that you had cancer? How?

The first symptom that I had was nose bleed, it bled profusely when I was seeping hot soup. That first time I did not quite bother about it. After a few days, the same condition occurred again and that time I noticed that I had a swelling around the neck area behind my left ear. I told my sister who is a nurse. She immediately and I consulted an ENT specialist.

 

  1. How did you and your family feel?

I guess a normal person who is told that he is suffering from any kind of malignant disease will either be angry or scared. I have always had a strong sixth sense and just before the outcome of biopsy, I already had the strong feeling that it would be carcinoma, basically due to the fact that I had never had any experience of nose bleed before. It was indeed painful, not only the physical pain, but the emotional distress was greater. The scariest part when told of the exact diagnosis was not how horrifying those bad cells were, but how the mind went blank all of a sudden – coupled with the feeling like the world was disappearing and no one was around. It was not the feeling of hopelessness, but a sense of nothingness, losing all thoughts and feelings and yet unable to shed a single tear. As for my family, they were sad too, but they were so supportive that they tried not to show any negative feelings in front of me. I guessed they were much more worried about my condition of feeling nothing.

 

  1. Share your experience on what you and your family proceeded to do after you were diagnosed.

You would be surprised with what I proceeded to do immediately after going home from the clinic. I have always been active on Facebook and I updated my status, which I still clearly remember – “Sorry, but I was diagnosed with NPC”. It was one of the most hit post on my wall with 100 over comments, there were friends who were concerned and they phoned me to ask about my condition but I did not answer any of their calls, as you know it would have ended up with other things than just listen and talk. Some people might think that sharing this negativity is not suitable. No one understood except one girl who was one of my friends in one of the courses I enrolled in university. She told me she knew. All I wanted was to keep people around me updated with my condition. My family and I did sit down and discuss about the treatment and my studies. For this, I am extremely grateful to my sister who had uesd her hard-earned savings to give me the best treatment – Intensity-modulated Radiation Therapy (IMRT). At that time, instead of just focusing on the treatment, I was silly enough to think that I could proceed with the treatment at Subang Medical Centre and continue with my studies at the same time.

 

  1. What were the side effects?  Which of these effects still affect you?

Nausea, energy and weight loss, and sore throat were the common effects during the treatment but all these improved immediately after completion, likely due to my youth. Several other side effects are still affecting me but I’m coping well with them. Radiology affected my salivary glands too, it was extremely dry two to three weeks after the beginning of radiology and until today, though improving, I am still facing slight dryness in the mouth if I take less hydrating food (biscuits, rice etc.). However the major effect that needs a longer time for a cancer patient to recover from is emotion, which I think would apply to all types of cancer patients. I encountered emotional imbalance during the post treatment and I found it quite difficult to get back into society. Negative thoughts kept playing in my mind and I had some problems in socialising when I resumed my university studies. Some people thought that cancer was just like AIDS, something incurable and they seemed to have a misconception that it could spread. Fortunately, I still had a few of my friends who were really supportive, they gave me a lot of thoughtful advice and soon I realised that to free myself from this emotional condition, depended on myself – to have a positive attitude towards everything. However, it is a long journey to recover as life is not always easy. There are always some sad moments which hit us once in a blue moon. It’s easy to let go but it’s never possible to forget, unless we lose our memories entirely. Again, it all depends on our own decision on which options we would like to end up with.

 

  1. How has the new technology like IMRT served to reduce long term side effects for you?

I do not know in detail particularly, but the position contoured through moulding has made the radiotherapy focus on the tumour location specifically, thus reducing the risk of damaging of the surrounding normal good cells. It also aims directly to the cancerous cells so that they are exposed to maximum radiation, though the teeth, mouth and thyroid which are located near to the radiation position might still be affected.

 

  1. How do you cope with the uncertainty of relapse after completion of the treatment?

I did look up some information from Google and seek consultation from my oncologist, the prognosis for my cancer is pretty good, but I did worry as well about the possibility of recurrence. However, it was just a short term of concern. I told myself that for the time being, my responsibility was to stay strong and fight these bad cells rather than waste time on something that is yet to happen. As for now, I would say relapse never comes to my mind since my life is extremely busy with my work, gym, entertainment, time with family and friends etc. I think all of these are far more worthwhile and important and should be listed as top priorities in my daily life.

 

  1. How has the diagnosis changed your lifestyle?

Six words – appreciate, work hard and play hard. For the one semester that I temporarily stopped schooling, other than going to treatment, I had nothing else to do. I spent my time watching movies and I completed Lord of the Ring, Pirates of the Caribbean and the Harry Potter series and I noticed that I started to fall in love with movies. Since then, I have begun writing short movie reviews. It has become my hobby and my entertainment to release bad feelings, regardless of having enjoyed the movie session alone or with friends. On the average, I watch and review 50-70 films per year and it is part of my life no. I feel that by watching different movies, different inspiring themes/ quotes make me learn to view life from different perceptions. It has also made me appreciate people who really care for me – my family who has given me a lot support, taking good care of me and sacrificing their time staying by my side; my friends, which at that difficult moment I learnt who were my best friends and who were not. My best friends and their family members were concerned about me too. Their parents did ask them to spend more time with me, sharing some positive thoughts. I’m glad that we are one complete gang that still keeps in touch each and every time I travel back from work in Kuala Lumpur. It has been five years now. After the treatment, I lost a lot of weight and it is extremely hard to regain my weight even though I have tried consuming as much as I could since I recovered my strength during the post-treatment. As such, I have made up my mind that every year, one of my desires on my wish-list is to gain weight. To my own surprise, I have joined a gym since last year, one thing that I had never expected to happen since I disliked gym before the illness. It is not just about maintaining a healthy lifestyle but getting to know more people through socialising during certain group fitness classes. I am glad that I from 41kg, my lowest weight recorded halfway through my treatment to now weigh 59kg now and I look quite fit (of course based on my height la). It doesn’t seem like much, but it is considered a huge success for a person like me who is facing a hard time gaining weight. I am still determined to achieve another 3kgs to reach my ideal weight. I also am more courageous in trying a lot of my first-time challenging experiences. Life is just too short and we may not have another same opportunity if we this one. While there are certain beliefs for Chinese culture that we should not take certain ‘harmful’ food if you are a cancer patient, I would say I do not let them bother at all. Live positively, I eat whatever I like but I have cut down on those unhealthy food (fast food especially). I even go clubbing every half a year – a social drinker, I just enjoy and hang out with friends. It is not like getting drunk but it is more about connect with people, why not?

 

  1. Any words of encouragement for those who are fighting cancer (or head and neck cancer particularly)?

If there is any opportunity, I would suggest that they watch a few related films – 50/50, The Fault in our Stars and Theory of Everything. All of these films provide a lot of motivation and inspiration in fighting for survival. When there is life, there will be hope. Even if there were only 1 day to survive, it means you do still have 1 day of hope to fight for your dreams and to battle with cancer. With advanced medical technology, giving up would certainly be a win situation for the malignant cells. I attended one of my company’s training sessions last year and I learnt that for whatever bad things that happen on us, it is fine for us to feel sad or angry for one day or maybe one short moment. After that we must stay positive and solve the rubbish, do not continue with negative feelings as it means you are keeping the problem. Problem must be banished. I once felt that I was the most unfortunate person in this world for being diagnosed with NPC. However, I thought again, how about those who have lost their loved ones, those who are poor, those who are the victims of crimes or disasters, those who are with critical illnesses? There is no point in comparing who suffers the most and to ask God why we are the chosen ones. Such a group is non-existent in this world as every problem has its own solution. I did experience it and I know it is necessary for those who are with cancer to act positively. To stay strong and keep on fighting are strong and powerful tools, without which medical treatments are unable to play their respective roles in battling cancer.

 

by Michael Seng Wah, Survivor 

interviewed by Priscillia Yuen, Community Relations